Fibromyalgia Syndrome
An Informational Guide for FM Patients,
Their Families, Friends and Employers
Fibromyalgia syndrome (FM) is a complex, chronic condition of widespread muscular pain and fatigue. Research shows that about 2 percent of all adults in the US have fibromyalgia (3.5 percent of women, 0.5 percent of men). In total numbers, that means that more than 6 million, and possibly as many as 11 million Americans meet the criteria for fibromyalgia. It affects women more than men in an approximate ratio of 9:1. It is seen in all age groups from young children through old age, although for most patients the problem begins between their 20s and 50s. Studies have shown that FMS occurs worldwide and has no specific ethnic predisposition.
Symptoms and Diagnosis
Patients with FM report widespread musculoskeletal pain (100 percent), fatigue (96 to 100 percent) and disturbed sleep (86 to 98 percent). In 1990, the American College of Rheumatology accepted a research diagnosis of fibromyalgia that includes chronic, widespread pain and tenderness in 11 of 18 specific points on the body. Fatigue, sleep disturbances, restless legs and leg cramps, impaired memory and concentration, nervousness, depression, disorientation, headaches, irritable bowel and bladder, premenstrual syndrome, and cold intolerance are some of the symptoms associated with fibromyalgia. Other conditions which may overlap with fibromyalgia include: chronic fatigue syndrome, depression, Lupus erythematosus, rheumatoid arthritis, Lyme disease, and neurological conditions such as cervical myelopathy, small posterior fossa and Chiari I Malformation. These conditions are termed co-morbidities and may also have been the trigger for fibromyalgia. Fibromyalgia is not life threatening, but there are a number of other conditions that are associated which can be life threatening.
There is no definitive blood test or x-ray to determine the diagnosis of fibromyalgia. This initially led doctors to believe that fibromyalgia is “all in the patients’ head.” Extensive studies now show that fibromyalgia has a physiologic basis most likely mediated by the central nervous system. Tender points are sensitive to touch and pressure. Fibromyalgia patients report allodynia (a condition when normally non-painful stimuli is painful) and hyperalgesia (extreme sensitivity to painful stimuli). Functional MRI testing shows that fibromyalgia patients’ brains do in fact respond differently to painful stimuli. Musculoskeletal pain and fatigue is a chronic problem and can wax and wan in the patient. There is no generally accepted cure for fibromyalgia and most patients can expect to have this problem lifelong. Treatment can reduce the severity of symptoms and help patients to lead a more normal life.
Treatment
Each person with fibromyalgia has come to the diagnosis through a different path and has a different set of symptoms. The best treatment program for each patient will include many components. For that reason, a multidisciplinary approach has been shown to be the most effective. There are also many things a person with fibromyalgia can do to improve the quality of their lives. Becoming educated about fibromyalgia is a first step. Education by both the physician and patient will decrease the frustration felt by both parties and help improve the odds of successful treatment.
Sleep
It is important for the physician to determine if the patient has problems with sleep. Some of these disturbances include sleep apnea, restless legs syndrome, periodic limb movements and teeth grinding, among other disorders that affect specific stages of sleep. Physicians may request a full sleep study to determine if a patient has a specific sleep problem, and to help determine the best medication for the patient’s condition. Patients need to be sure they are doing everything they can to improve their sleep. Learning about good sleep hygiene, and the actions they can take to improve their sleep, is one of the most important ways a patient can take control of their chronic illness.
Exercise
People with fibromyalgia frequently become deconditioned and lose muscle tone because even normal activities seem painful. Increasing appropriate daily activities can be beneficial for the person with fibromyalgia. Research has shown that eccentric exercises (using muscles that are both contracted and lengthening like in vacuuming) are especially hard on people with FM. However, most activities can be modified. Patients can take smaller steps when walking down hill and walk forward with the vacuum cleaner instead of pushing it out and in all with arm movements. One way to think about how to modify activities is for the person with FM to imagine they have a hoop skirt around their neck. All their arm motions should stay within the confines of the imaginary skirt. As the person with FM increases daily activities, efforts should be made to add a regular exercise and stretching routine. Regular walking, the use of a stationary bicycle, and swimming or other low impact type of activity can be beneficial to FM patients. Supervision by a physical therapist or an exercise physiologist can be of benefit. The researchers at the Oregon Health and Science University have made wonderful materials on exercise available at the Fibromyalgia Information Foundation website, www.myalgia.com. It is okay to start slow—even one or two minutes a couple of times a day can begin to improve the conditioning of a person with FM.
Medications
Over the counter drugs like Advil and Tylenol are not particularly effective in fibromyalgia. Their greatest help may come in decreasing the pain of co-morbid conditions like arthritis. In June 2007, Lyrica (pregabalin) was the first medication to receive a listing for fibromyalgia from the FDA. Other medications may be listed by the FDA in the coming months. However, no medication works for all patients or for all symptoms. Caring physicians will use Lyrica and other medications that have been researched in fibromyalgia to improve livability for people with fibromyalgia. Tricyclic antidepressants such as Desyrel, Elavil, Flexeril, Pamelor, and Sinequan can help with both pain and sleep because depression and pain share similar pathways in the brain. Generally, in people with fibromyalgia these medications are prescribed at levels below where they are indicated for depression. Medications that affect the neurotransmitters serotonin, norepinephrine and dopamine are Paxil, Prozac, Zoloft, Effexor, Mirapex, and Cymbalta are frequently effective. Some patients find relief of fibromyalgia symptoms and co-morbidities with anti-anxiety medications such as Xanax and Klonopin or muscle relaxant medications such as Norflex, Flexeril and Zanaflex. Anti-convulsant medications such as Neurontin and Topomax also provide relief for many patients. Narcotic painkillers are used effectively by many physicians for the pain of fibromyalgia. However, other physicians have avoided narcotics for fear of addiction. Recent research shows that addiction seldom occurs when these medications are used in chronic pain states. It is important to understand the difference between addiction and dependence.
There is no single medication that will relieve all of the symptoms associated with fibromyalgia. Physicians must work closely with their patients to find the right combination of medications that most improve the patient’s symptoms while minimizing the negative side effects that come with each medication.
Myofascial Trigger Points
Research studies indicate that up to 68% of persons with fibromyalgia also have myofasical trigger points. It is unclear if these are co-morbid conditions or triggers to the pain of fibromyalgia. Trigger points are different from tender points in that they are taut muscle bands that feel like a knot or lump underneath the skin. There is pain when they are pressed on that can radiate to other areas of the body. Tender points are sensitive to pressure and are part of a diffuse body wide condition. Treating the trigger points can help to reduce fibromyalgia pain. Treatment may include injecting the trigger point with Procaine and then stretching the affected area in a technique called spray and stretch. The injection can be quite painful and there is typically a two to four day period before the effects are noticed. Dry needling has also been effective when utilizing an acupuncture needle and inserting it into the trigger point which allows the muscle to relax and lengthen. Other techniques that may be helpful are heat, massage, and gentle stretching.
Depression
About 20 percent of people with fibromyalgia have a co-existing depression or anxiety state which needs to be appropriately treated with therapeutic doses of anti-depressants or anti-anxiety medications, often in conjunction with the help of a clinical psychologist or psychiatrist. Patients who have a concomitant psychiatric problem have a double burden to bear. They will find it easier to cope with their fibromyalgia symptoms if their psychiatric condition is appropriately treated. It is important to understand FM itself is not a psychogenic pain problem and that treatment of any underlying psychological problem will not cure the fibromyalgia.
Balancing Daily Activities
Most FM patients quickly learn there are certain things they do on a daily basis that seem to make their pain worse. These actions usually involve the repetitive use of muscles or prolonged tensing of a muscle, such as the muscles of the upper back while looking at a computer screen. Careful detective work is required by the patient to note these associations and where possible to modify or eliminate them. Pacing of activities is important; we recommend patients use a stopwatch that beeps every 20 minutes. Whatever they are doing at that time should be stopped and a minute taken to do something else—possibly stretching. Patients who are involved in fairly vigorous manual occupations often need to have their work environment modified and may need to be retrained in a completely different job. Certain people are so severely affected that consideration must be given to some form of monetary disability assistance. This decision requires careful consideration, as disability can cause adverse financial consequences as well as loss of self-esteem. In general, doctors are reluctant to declare FM patients disabled and most FM applicants are automatically turned down by the Social Security Administration. Each patient needs to be evaluated on an individual basis before any recommendation for or against disability is made.
Complementary and Alternative Therapies
There are many therapies that fall in this general category that may prove to be effective for people with fibromyalgia. Postural training, occupational therapy and relaxation therapy can help in improving body mechanics and decreasing pain instigators. Acupuncture, hypnosis and cognitive/behavioral therapy have been studied in chronic pain states such as fibromyalgia. Research is still limited, but it appears promising and these treatments may be helpful when included in a comprehensive pain management program. Nutritional therapy such as vitamin and mineral supplements can help with stress and supporting the immune system. While there is no specific fibromyalgia diet, people who suffer with fibromyalgia should work to improve the nutritional quality of the foods they eat and work with their physicians to ensure they are not suffering from conditions such as celiac disease or other treatable conditions that impact the digestive system.
